Sunday, March 15, 2015

school has been really busy. i've been putting my all into studying, trying to learn and grow. i find myself so interested in the things i'm working with, especially in my Anatomy class and Lab. every week i go and it feels like i can't get enough knowledge---i'm trying to find ways to cram it all in and yet i still find myself wanting more.

i had a moment in my Anatomy Lab where i was standing by myself in the back of the room, holding a human brain, staring at the parts of this brain that were supposedly shrinking the most on my sweet boy.....i stood there and stared and stared and had such a strong wave of feelings come over me that i had to hurry and leave the room because i felt myself about to completely lose it.

i couldn't breathe and i had to get out before i fell to pieces in front of a room full of students.

i left, found a stall in the bathroom and tried to remember how to breathe.

the feelings i was having, they were so forceful and strong and looking back i've been able to pinpoint what those feelings were.

i just missed my son! the ache is always there, but sometimes there are moments where it feels like it's hitting me all over again. it feels like he was just here, or that he's just in the other room and i need to get to him, he needs me to come get him! and then like a ton of bricks hitting me right in the stomach, i remember. i remember that he's not here and that's why i'm standing in this lab, and not at home with him instead.

i wanted answers!! i stood there holding this brain, staring at the exact structures and parts that were failing my son and it's like i wanted them to speak to me! i had the insane notion that if i stood there long enough, if i somehow stared at it long enough or looked at it from the right angle, it would give me the answers i'm so desperately seeking. like the diagnosis would just become miraculously clear as i was holding it. i stood for such a long time staring......... searching.......... waiting......................

when i realized what i was doing----standing with a brain in my hands, waiting for it to speak to me----i felt such an overwhelming sense of absurdity and frustration that i couldn't handle it any longer. tears started coming and i knew if i let them flow they wouldn't stop. so i left. i got out. i stood in a bathroom stall, clenching and unclenching my fists and tried to remember how to breathe.

i want to find answers.

i don't know what that means, really.

i want my life, my life moving forward, to mean something.

i didn't find answers for my beautiful boy, i don't know that i ever will.

that's a hard truth to deal with.

but i want to keep trying.

i want to keep searching..... and who knows, maybe somewhere in that search i'll find answers for some other family, some other mother who's HOPE is still there, who's faith has not been shattered by question after unanswered question. maybe i can give light to someone stumbling in the dark, provide a beacon for just one person who feels lost in the abyss.

Sunday, February 15, 2015

i can feel it all building up inside me.....all my thoughts, feelings and emotions have been piling up and need a way out.

this is my way of letting them out.

problem is, i don't know exactly what i'm letting out.

there's such a jumbled mixture of 'stuff' inside me that most of the time i can't even pinpoint what it is that i'm feeling.

or thinking.

so how do i let it out??

i'm not really sure.

my first writing assignment for English this semester was to write a memoir paper.

i finished it last week and am going to share it here.

as i wrote the paper, i felt it.

writing this paper was hard at first, but once i let go and just felt it, connected to my emotions and just remembered and let myself feel.... it became a therapeutic release in a way.

i write because it helps.

i write to get it out of my head.

i write because i need to.

in this case i wrote because it was an assignment, but as i gave in and surrendered to my memories, it became so much more.

i'm sharing it here because it's part of my journey, the story of me.

He Needs Me

End-of-life
decisions.Breathe.Just focus on breathing.My
chest constricts, each inhale a calculated thought.Every exhale is accompanied by a frantic
worry it could be my last chance for air.Focus.I put up that familiar wall, a carefully
constructed shield of stoicism I have labored painstakingly for years to build,
layer by armored layer.I can do this.I am his mother; I am strong.I study my hands so intently, memorizing
the slight indentations on my ring.In
two places the silver is bent ever-so-slightly on either side of the infinity
symbol that rests delicately on my left index finger.Infinity…
Yes, I can do this.Slowly I raise
my eyes, glancing first to my left and then deliberately around the room, my
gaze resting for just a brief moment on each doctor positioned around me.

This is it.Six
years of unanswered questions, the steady relentless pursuit to discover a
diagnosis comes to an abrupt halt on the third floor of the Pediatric Intensive
Care Unit. Countless hours, days and weeks spent in this very hospital
searching, testing, waiting, prodding, hoping… It has all come down to this
moment.Why am I here?Why am I sitting
here in this room without my son?It’s
a common break-room turned makeshift conference area, the tables pushed
together in a feeble attempt to resemble something more official.A microwave sits on a section of countertop
running alongside the back wall.It’s
almost insulting, assembling in this counterfeit space to hear me utter the
most gut-wrenching words of my life. Today
is the day I acknowledge the fact that my son isn’t going to live.Today is the day I say it out loud, to myself
and to this room full of doctors—my son is dying, he’s going to die.In the next few days my son will be dead.

The room is small.A faint scent of hospital food, someone’s late afternoon lunch still
lingers in the air. The odor is sweet
and tangy, almost offensive.It reminds
me that my appetite doesn’t exist.A
quick flash of anger stirs from somewhere deep inside me.How
could anyone be eating on a day like today?How is life still moving forward when my son is two rooms away, actively
dying? The anger flees as quickly as it was born.I sit amongst various hospital staff, at
least five of them are doctors I have grown to love and respect as care-givers
and medical warriors fighting to find answers for my son.I see it in each of their faces, they know we
have lost the fight.They too are broken,
emotions pooling in their eyes, exposing a deep sorrow as they await my
declaration of defeat.

Do not resuscitate.How did I get here?Suddenly I feel trapped.Panic clenches my throat like a savage wolf
seizing its prey, the salmon colored walls close in all around me.In one quick instant the room becomes a
vacuum, the air sucked out by the dire specter before me.There’s no running from this, denial is
futile.There’s not a drug on earth
strong enough to numb me from the brutality of what is to come, from what
already is.Every memory of my sweet boy surges through
my veins at once, pulsing with each heartbeat.Quick and hard.Quick and
hard.Quick and hard.My entire body swells in desperation.I want
to run.I need to get out of here!A tornado of emotions is dismantling my
insides, leaving in its path a wreckage of wounds so deep they won’t be
discovered for years to come and yet I sit here motionless, completely still.Breathe
in.Focus.You’re his mother.He needs you.

My thoughts travel backward in time, transporting me to just
two weeks prior.I’m sitting on the
carpet of my living room floor, my beautiful boy sprawled across my body as I
rock him back and forth.We’ve been in
this position for days now, non-stop.Our bodies intertwined, it is impossible to distinguish where he ends
and I begin.Our souls have always been
this way, inexpressibly connected.Physically, my son is so fragile. His body is literally shutting down with every
valuable moment that passes.Holding
him, I feel our time together is nearing its end.I’ve been petrified to let this feeling in,
to recognize it for what it is---the truth.

His
breathing is labored, frantic and unpredictable.The struggle for air grows more desperate
with each unsuccessful attempt, his effort weakening by the minute. The
inevitable is fast approaching, I can feel it in my mother’s soul.Remarkably, this realization descends upon me
the way dusk gently steals away the day.I stop rocking, for the sheer intensity of my love in this moment is so
overpowering it almost consumes me.He
looks at me.My son, who can’t control
his movements and has never uttered a single word, looks at me purposefully and tells me everything I
will ever need to know.He tells me it’s
all okay.

Withdrawal of life support.Abruptly, I return to the present.Breathe.He’s my son.I can do this.I’m speaking
now.Mechanically, I answer the doctors’
questions, the somber mood of the room has somehow shifted into a business-like
atmosphere.So many details involved,
agonizing choices to be made.I am
articulate and coherent, relying solely on my brain to respond.My heart remains detached, safeguarded by my
invisible fortress, my wall.I’m making
decisions that no mother should have to make, I’m doing it alone.Thirty years old, I sit by myself and discuss
the imminent death of my life’s true soul mate.

My composure throughout the entire meeting has not
wavered, a strength from somewhere beyond my realm of understanding has buoyed
me, has given me the breath in my lungs I so desperately need to get through
this.I am strong, I am doing it.I’m
breathing, I’m still breathing.And
then she touches my arm.A simple
gesture from the doctor sitting closest to me, just a brief squeeze right below
my elbow, and I completely lose it.My
wall comes crumbling down so fast I’m sure the whole hospital can feel the
impact of the collapse.Exposed, my
heart feels everything all at once.Six
years of raw emotions, cautiously kept at bay, now spill from my heart like
water through a burst dam.My son is dying!He’s not going to live.I want him to live!I can’t save him.I’m his mother and I can’t save him.I just want to save him.

The meeting is over.People excuse themselves as I quietly weep,
my body slowly embracing the sobs, almost like a soulful dance.I accept this dance, embrace the rhythm as it
whispers soothing words of comfort to the very depths of my being.I wipe away the tears that slide down my face
and look around me. The room suddenly feels so starkly empty and I know exactly
where I need to be.I stand, battered
and bruised but not broken.I am his mother.I quietly leave the room and walk steadfastly
down the hallway towards my strength, my son.He needs me.

About Me

i am a mom. i have 2 beautiful kids. my daughter is 6 and is the older sister to her special little brother, who's 5. he is our special little boy, my beautiful boy. he has special needs, currently he is undiagnosed...they do know that he has a neuro-degenerative brain disease, his brain is atrophying. no doctor can figure out what is causing it or what it is called. not yet, anyway. for now, i am just doing my best, raising my beautiful babies and loving them with all i have.